Forum

PPMS?

Hi All

I hope you don’t mind me posting in here, I am undx’d. But was wondering if I could pick your brains? I normally post in the limbo section.

I saw my neuro this week and he told me to my face that MS is unlikely as although I have the right symptoms, they are just getting worse (especially my legs) instead of new symptoms showing up (presumably for a dx of RRMS?) (He’s previously told me he thinks I have chronic migraines, but this week said he still thinks its a possibility but went on to tell me people with chronic migraine do NOT have the leg problems I have)

I had a brain scan last year which was normal, he has now ordered extra tests for me, one being a spinal MRI, (he thinks a brain one is unnecessary as my last one was clear ??) , and has also asked for a VEP and LP.

After I left his office, feeling pleased that I’m getting extra tests but rather annoyed that he keeps mentioning chronic migraines and telling me MS is unlikely, I read the papers that I was to hand in to reception… They were more enlightening.

He’s written “Possible MS but MRI NAD”
And “Evidence of demyelination ?MS” (During my exam my big toe went upwards, I’m guessing this is what this means?)

And on my blood form he’s written on the top of it “Spastic Paraparesis”

When I came home, I did the dangerous thing of googling!!

I found this in the MSTrust site under PPMS: " Most commonly this is seen as increasing stiffness and weakness of the legs (progressive spastic paraparesis), but other symptoms can occur such as unsteadiness, tremor or visual loss. "

My main symptoms are my legs, (stiff and weak, lots of myoclonic jerks, getting worse) balance issues, (getting worse), minor visual problems and bladder problems. (As well as normal (!) stuff such as pins and needles, partial numbness (legs and feet) burning, electric shock sensations, tiredness, etc etc.

I also found that for PPMS its most commonly found that brain lesions are few if any and there are more spinal lesions. And a VEP and LP is needed to confirm (or rule out)

I am now wondering whether this is what my neuro is thinking?? He’s obviously not one to voice his opinions to me (as he’s already told me he thinks MS is unlikely, but wrote on my notes possible MS ??)

A very quick history of my symptoms: Started in Jan 2007 with p&n in my finger, over the next few months more a more symptoms crept in, mainly dizziness and muscle weakness, stayed for 2 years (no breaks!) Was dx’d with CFS/ME but I disagree! I don’t fit in the main diagnosis criteria. Then I did some mad very controversial brian re training thing, I felt at the time I had nothing to lose and it did put my symptoms as bay for 18 months!!! Since they’ve come back 2 years ago, I have had a couple of breaks (so doesn’t match in the PPMS) but even in my breaks I wouldn’t say I was 100% and my symptoms are gradually worsening, I have had new symptoms, although not many (just the neuro didn’t take much notice of them!) I think I started with a lot of symptoms in the first 6 months and they have just stayed, returned and/or got worse!!

Sorry this is getting longer that I anticipated!

What do you PPMS’ers think? Am I looking too deeply? I know I should have answers soon ish after the tests (hopefully) But I am very curious about it.

I am interested in hearing your stories of your symptoms and how you became dx’d with PPMS.

Thank you :slight_smile:

Jules x

Hi Jules,

Unfortunately ‘chronic migraines’ are a recognised complaint but they are an easy get out of jail free for doctors who are basically impotent on diagnosing a neurological complaint, see http://www.mult-sclerosis.org/diagnosingms.html Don’t blame them as it is very difficult.

If you get headaches frequently I would ask for an APS Antibody test just in case. See
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736

George

That’s the thing George, I don’t get frequent headaches! I do get some but not frequent!. To be dx’d with chronic migraine the criteria states at least 15 headaches in a 30 day period. Now that’s a lot, I get no where near that!

Thank you for your comment though

J :slight_smile:

Hi Julies, I think we have slightly similar history, and I was dx with ppms in 2008. However, want to stress that similar symptoms does not mean same condition, or indeed same type of MS. Thing is, until you are dx you will not know and nobody on here can really dx you, but I’ll give you very brief history to compare.

Had few years of pins and needles, occasional numbness (calves feeling like wood, fingers feeling big and clumsy). Episodes of fatigue… kept thinking I was getting flu but never actually got it. Got shingles in 06 and couldn’t recover energy. Went downhill from there. Dizziness, electric shock sensations, buzzing and tingling in legs, light-headedness, constipation, cognitive problems. Was initially dx with ME/CFS and migraine. They did MRI and said there were a few ‘bright spots’ so did LP and then dx PPMS. Since then a lot of problems with walking and balance.

It is dangerous, as you say, to read too much on internet. On other hand, when I started looking at symptoms, I also thought it wasn’t ME/CFS… I read about PPMS and felt sure that’s what I had. It did mean that the dx didn’t come as a huge shock. Only confirmed what I already knew.

Dx for PPMS can take a long time, people on here that have had an ok LP and still have all the PPMS symptoms… what I’m saying is, be patient. Consider PPMS as a possibility, and then wait for dx. It does help once you get the dx… much better to know what you’ve got. And remember, PPMS, like all forms of MS, varies considerably from person person. Progresses at different rates and extent of disability different for everyone.

Hoping this helps, :slight_smile:

Pat x

Thank you for your reply Pat.

I understand totally. Im not looking for dx on here, but just some comparison stories. I am the type of person that does dig deep and researches a lot. I find the more information I have, I can deal with it better. And if I do have PPMS or indeed any type of MS, like you say, it’s not going to be a shock. (although when he does eventually say those words to me, I think I will fall off my chair!!)

I think what I am looking for, although its near on impossible, is try to decipher the neuro’s thoughts!! (See I told you… impossible! :slight_smile: ) And try and read between the lines to see if that is what he is doing!

This limbo lark is horrendous. I really just want to know now. It’s been about 4 and half years since onset

Thanks again Pat!

J x

Hi Jules.

I’m still in Limbo, like you, and just wanted you to know you’re not alone in your frustration! My symptoms have been getting worse over the last 4 and a half years, and still I have no answers.

My main problems are with my legs - pain and the inability to walk for longer than 5 or 6 minutes continuously. I have major fatigue after doing comparatively little, very sensitive feet (at one time they tingled so much for 6 weeks I had to put them in a bowl of cold water every night before I could get any sleep), and often a numb right hand. My legs have a combination of tight, gripping pain + sharp shooting pains which make my legs move. Also electric shock type pains in my back… the list could go on.

I’ve had a clear MRI + LP, my VEP was borderline, SSEP test showed weakness in the left leg, blood tests show low Vitamin D…
At a previous appointment with my Neuro in March, another doctor was in the room and he suggested my diagnosis was PPMS. However, the neuro said he couldn’t diagnosis due to no evidence in MRI + LP. He’s now sending me to an ME/CFS specialist to see if that could be the problem!

I’m so frustrated by it all after all this time. I’m taking Pregabalin for the Neuropathic pain. Unfortunately, the Neuro said that after my next appt (May 2012) he won’t be able to see me anymore as he is only allowed a certain number of follow-ups. My life has changed so much and bears no relation to what it was like before, so it’s a bit scary to think I’ll be left without any advice or help.

Like you - I just want to know! To have an answer would be 100% towards getting support or at least knowing how to manage the condition. I really hope you get some answers soon. No-one wants MS, but even that diagnosis is better than Limboland!

Hang in there & take care while you wait

Bren2 x

JulesL wrote:
Thank you for your reply Pat.

I understand totally. Im not looking for dx on here, but just some comparison stories. I am the type of person that does dig deep and researches a lot. I find the more information I have, I can deal with it better. And if I do have PPMS or indeed any type of MS, like you say, it’s not going to be a shock. (although when he does eventually say those words to me, I think I will fall off my chair!!)

I think what I am looking for, although its near on impossible, is try to decipher the neuro’s thoughts!! (See I told you… impossible! :slight_smile: ) And try and read between the lines to see if that is what he is doing!

This limbo lark is horrendous. I really just want to know now. It’s been about 4 and half years since onset

Thanks again Pat!

J x

Te he Jules if only we could read neuro’s mind eh? They are a funny breed. Scientists basically and no bedside manner at all. Some better than others of course, but generally they lack ‘people skills’… :o

People often forget that before internet you could go to library and browse through a shelf-full of medical books… which I have done for various things in my life. I think researching on internet is great. It led me to these boards which have been a huge help.

Take care Jules and hope you get some answers soon,

Pat x

Hi Jules
I know exactly what you’re saying. Your symptoms are very similar to what mine were in the beginning and I did the same as you, posted on this site (back in 2003) because all my symptoms I researched and it always came back with MS.
I was diagnosed with PPMS in 2004, following a VEP, brain MRI and physical examination. In 2007 I was rediagnosed with PRMS (Progressive Relapsing MS) because I queried my initial diagnosis as I was having a few relapses.

I know the waiting game is horrendous, and I remember when I got my diagnosis (initially from my GP) who said he was dreading telling me because it was not good news. I just felt a sense of relief that at last I had a label for the symptoms I had been experiencing.

I hope you get some answers soon and I wish you all the very best

Dawn

Thanks Dawn

I hate all this waiting. I think as well, I could possibly be getting closer to an answer so I am becoming more anxious… ??

Every time I read about PPMS, the same things pop up, less lesions in the brain than RRMS, most commonly presented with progressive spastic paraparesis, average age at onset 40 (I am 41) Just all seems to fit, and the way the neuro spoke (between the lines) and wrote down his findings…

I know I HAVE to wait and see, but this interim is so annoying!!

Jx

Hi jules,
I’m also a limbo person Which is horrendous :frowning: .I also usually post in undiagnosed but sometimes have a look on here as I also think I could have ppms. I have been Ill now for 2 and half years and like Bren who replied further up,we have similar symptoms with walking being the most and my god the fatigue,I also find fatigue really difficult as doing anything remotely normal just wipes you out !!!,I had MRI a year ago a brain and spinal and nothing much showed up part from my usual as I have disc degeneration in my lower spine and a new one of cervical spodlyosis.
My neuro didn’t have much to go on so said he would see me in a year but I’m going back early next month as I feel I’m getting worse with added dizziness/balance problems and leg and back jerks. I just want to say I’m like you I need to research just to make sense to me what could be happening as we all know something is wrong,nothing wrong with it but it can give you a bit of a headache so I stopped looking too much and try and accept what is going on until I know what.it’s vey hard in limbo I agree with you and it has helped us find this site so we can talk to other people going through same thing :).

Patience is the only thing left for us however hard,we know what you are going through,keep each other updated on how things go.

While waiting for diagnosis take care luv Chris xx
Y

Thanks Chris

it’s nice to know there are other people feeling the same as you do. Horrible that people have to feel this way though!!

If only the diagnosis process could be easier, I think, well I’m hoping, that once diagnosed I will be able to tackle this illness head on. I’m fed up of people, especially my own family, saying things like; just wait and see what the doctor says… It may not bad as bad as you think… You’re reading too much and imagining all these symptoms… etc etc… It’s driving me mad. Once I have a dx at least I can cut that part out!!

I’m praying if I do have MS its RRMS not PPMS but my symptoms just seem to go with PPMS…

Let me know how you get on next month with your neuro, it is so nice to speak to other people in the same boat.

Take care

Julie x

JulesL wrote:
Hi All

I hope you don’t mind me posting in here, I am undx’d. But was wondering if I could pick your brains? I normally post in the limbo section.

I saw my neuro this week and he told me to my face that MS is unlikely as although I have the right symptoms, they are just getting worse (especially my legs) instead of new symptoms showing up (presumably for a dx of RRMS?) (He’s previously told me he thinks I have chronic migraines, but this week said he still thinks its a possibility but went on to tell me people with chronic migraine do NOT have the leg problems I have)

I had a brain scan last year which was normal, he has now ordered extra tests for me, one being a spinal MRI, (he thinks a brain one is unnecessary as my last one was clear ??) , and has also asked for a VEP and LP.

After I left his office, feeling pleased that I’m getting extra tests but rather annoyed that he keeps mentioning chronic migraines and telling me MS is unlikely, I read the papers that I was to hand in to reception… They were more enlightening.

He’s written “Possible MS but MRI NAD”
And “Evidence of demyelination ?MS” (During my exam my big toe went upwards, I’m guessing this is what this means?)

And on my blood form he’s written on the top of it “Spastic Paraparesis”

When I came home, I did the dangerous thing of googling!!

I found this in the MSTrust site under PPMS: " Most commonly this is seen as increasing stiffness and weakness of the legs (progressive spastic paraparesis), but other symptoms can occur such as unsteadiness, tremor or visual loss. "

My main symptoms are my legs, (stiff and weak, lots of myoclonic jerks, getting worse) balance issues, (getting worse), minor visual problems and bladder problems. (As well as normal (!) stuff such as pins and needles, partial numbness (legs and feet) burning, electric shock sensations, tiredness, etc etc.

I also found that for PPMS its most commonly found that brain lesions are few if any and there are more spinal lesions. And a VEP and LP is needed to confirm (or rule out)

I am now wondering whether this is what my neuro is thinking?? He’s obviously not one to voice his opinions to me (as he’s already told me he thinks MS is unlikely, but wrote on my notes possible MS ??)

A very quick history of my symptoms: Started in Jan 2007 with p&n in my finger, over the next few months more a more symptoms crept in, mainly dizziness and muscle weakness, stayed for 2 years (no breaks!) Was dx’d with CFS/ME but I disagree! I don’t fit in the main diagnosis criteria. Then I did some mad very controversial brian re training thing, I felt at the time I had nothing to lose and it did put my symptoms as bay for 18 months!!! Since they’ve come back 2 years ago, I have had a couple of breaks (so doesn’t match in the PPMS) but even in my breaks I wouldn’t say I was 100% and my symptoms are gradually worsening, I have had new symptoms, although not many (just the neuro didn’t take much notice of them!) I think I started with a lot of symptoms in the first 6 months and they have just stayed, returned and/or got worse!!

Sorry this is getting longer that I anticipated!

What do you PPMS’ers think? Am I looking too deeply? I know I should have answers soon ish after the tests (hopefully) But I am very curious about it.

I am interested in hearing your stories of your symptoms and how you became dx’d with PPMS.

Thank you :slight_smile:

Jules x

as has been said it is a hard illness to diagnos,because the symptoms ccould be something else,but I think I read that you have to have 3 diffrent eposides of MS type things before they start to think about MS,it must be worrying,when I got ddiagnosed the doc I seen at local hospital told me he was sure it was MS,just by reading my notes,but wanted it cconfirmed by all the usuall tests,and he was right :frowning:

Hi Jools, I'm also still on the old Incapacity benifit and am dreading being assessed for ESA (when postman comes and I hear something heavy drop through the letterbox I'm almost too frightened to go and look!).

When I was having trouble getting DLA I joined a website called 'Benefits and Work'. Lots of MSers on here belong to it. You pay an annual membership fee of around £20 but it is SO worth it. They have guides to all the benefits... step by step guides that are easy to follow... written by lawyers who are benefits experts. 

I know that when the dreaded brown envelope does arrive I can immediatly go on Benefits and Work to help me through the process.

I highly recommend it. CAB helped me with my first DLA application and I got turned down. It was Benefits and Work guide that helped me finally get it.

As far as I know diaries cannot be used as evidence. I think letters from GP, neuro and MS nurse can be used, but I'm not entirely sure. I know I should check it all out now before I get assessed, but I also know that I will forget anything that I read now so may as well wait until I need to know.

It's just so awful that people living with chronic illness and disabilities should be living in fear. So much for the promise that 'the poor and vulnerable will be protected'. Huh!!!! angry

Take care,

Pat x

hey Julies..............spastic paraparesis is my current dx!!!!!

it is followed by 2 words....`cause unknown`.

I have been on the most rediculous and cruel roundabout with neuros since 1999.

Here`s a brief run down for you;

1999...............saw consultant privately, as NHS waiting list was 10 months

he said he couldn`t dx me, but suspected a few things.

MRI/LP/EMG/EVP tests all came back normal.

No let up in progressing mobility /spasms/spasticity/bladder/bowel problems

2003.......given 95% PPMS dx.

2010...dx`d with HSP.............although no family of it found

2011.....HSP dx squashed and probable PPMS dx again

2012.......now they said MS not the problem, but SP with unknown cause!

As you can imagine this mess has driven me crazy.....not literally tho`.

Next Friday, I have an appointment with MS nurse, but i dunno why if I ain`t got MS! Think I`ll be asking for a referral to a top MS doc in Leeds.

Whereabouts are you?

luv Pollx

Hi Poll HSP would fit me really, as both my grandfather and father had problems with peripheal neuropathy, and legs, and stiffness etc, and deafness.

I was watching my wedding DVD and my dad was still alive then but poor with his legs, and he was walking the same as I do now with my stick. He was diagnosed with Lupus and Cryoglobenimia, but when he died the specialist for his cryo, said the did not find the protein for lupus in his system, and he would query that lupus diagnosis, so what did he have would be interesting to know. My grandad had peripheal neuropathy for years, then finally before he died was diagnosed with parkinsons.

It certainly would fit me to be honest. I feel so sorry for your journey its as bad as mine.xxx

Hi Jules

Just had to write and say my symptoms and experiences are so like yours we could have been twins in a former life.  Like you, my main problem is terrible  balance problems, ghosting and double vision, bladder incompetence etc.  Also, I have been told I am getting migraines when I clearly don't get them.  My specialist seems to have a different reason for my problems each time I see him - even, on one visit, saying I was losing my balance as I was scared of losing my balance. I too, have had a clear MRI and due to this, even though I know I am getting worse (a tenfold increase in 6 months) he has effectively written me off.

With me, he referred me to a different specialist who now disagrees with most of what the first one says so I'm still not really sure where I stand but this new bloke is definitely far more interested in my case and is keeping a much closer check on me than the other one.  

I guess what might work for you would be to ask for a second opinion - it may just work - I don't see what harm it could do so maybe it is something you could consider.  It seems to be getting me a bit further up the diagnosis ladder but you tend to wonder who is right if one disagrees with the other.

Keep in touch.  I could learn a lot from you since our symptoms are so similar.  Don't forget you can p.m. me at any time.

Take care and don't give up.

Patricksmate

Hi everyone.. thanks for all the new replies.. even though I riginally wrote this post back in Sep 2011!!  :)

I haven't been on here much.. trying to shove it all out of my mind tbh!!

I am about to post a new update...  In unDx section.

 

Poll..  I have read lots of your posts with interest over the past few years I've been on here.  (and old forum)  you certainly have had a tough time..  I've had 'whatever I have' for 5 years now..  and I just want a dx.. cant imagine the years you've waited!!

(I'm in Liverpool, under The Walton Centre')

xx

There are a few reports about false diagnosis on the Barts & London blog this weekend, so best to be patient.

http://multiple-sclerosis-research.blogspot.co.uk/2011/08/ultimate-price-of-false-diagnosis.html

Hi Jules

 

You seem to be on the long journey many of us have been on.

I had over a year and a half of tests before they finally gave up and its only since last year that they felt confident

to actually diagnose me as having MS. 

The tests which really confirmed it were all the MRi scans ( I have no lesions on the spine only on the brain)

and the Lumber puncture test, which was awful as they discharged me shortly after thus I ended up having to take a week of work due to the murderous headache afterwards.

Even now I have still not been confirmed as having ppms yet I have no relapses and have steadily gotten worse over the past 5 years. But hey I have two arms and two legs which still work (just about) and am still around to give the kids a nag now and again so who can complain eh?  lol

Like whammel said you can only wait and see what the results are but i would say to ask the consultant for a Lumber puncture even though its not nice its helped confirm MS.

Best of luck Jules

Kath

x